It’s a sunny Saturday morning. You’re at home in your sweats flipping pancakes as part of a leisurely breakfast. The popping, perky playlist is on, and your two-year old is in a booster seat, using her kid-sized spoon as a drumstick on the table keeping the beat. The dog is underfoot, there’s no pressing errand to be done today. It’s a play day. Suddenly the drumming on the table slows and the banging sounds come from the booster chair. Your child’s entire body is stiff and shaking, her eyes are rolled back into her head, and the guttural sounds from her mouth can only be described as frightening. You leave the pancakes and rush to her. You unbuckle her from the chair and slowly bring her to the floor, keeping an arm under her head and the back of her knees so she doesn’t harm herself. After doctor visits, imaging, tests, and pokes and probes, the report comes back: intractable seizure disorder. The seizures happen as much as ten times per day. This is your life now.
This is reality to parents across the nation; Iowa is no exception. For the last ten years, Shelby Heuck has experienced daily seizures, and complications from the strong anticonvulsant medications prescribed by doctors all over the Midwest. Her parents have appealed to the Iowa legislature, and progress has been slow. In 2014, Iowa passed a law that made it legal for patients or the parents of minor children with intractable epilepsy to possess small doses of medical cannabis. However, no one in Iowa can produce it, and it’s illegal to transport it across state lines.
In 2015, the legislature considered expanding access to medical marijuana. Real access may come to late for Shelby, according to her parents.
According to the National Epilepsy Foundation, 1 in 26 people will develop epilepsy in their lifetime. This translates to 12 million people alive today. They have developed the hashtag #1in26 to raise awareness.